Finding a way to explain the mixed signals of Functional Neurological Disorder
It’s been a minute since I’ve written. I haven’t known what to say without sending my own mixed signals. FND is confusing. Neuro PT is confusing. Cognitive Behavioral Therapy is confusing. Trying to explain any of this…starting with “what exactly is FND”…is confusing.
But, the other night, when I was looking up some information about FND…I came across the social media accounts of another woman living with FND. And she explained it in the easiest-to-understand way I’ve heard or seen since I was diagnosed in March.
With her permission…I’m sharing it with all of you. I’m hoping that this will help me understand all of this better so I can help others understand all of this better.
where’s the remote
“I think FND is one of the hardest conditions to try and describe, so please bear with me on this one.
Sara @chronicallysparkles
Imagine you’re using the remote control for your television, but none of the buttons do what they’re supposed to.
You press “1“, and it switches to “channel 4“.
You press “channel up” and the volume turns down.
You press “volume down” once, and the volume does go down…but it goes all the way down…to zero.
There’s nothing mechanically wrong with the television…or with the remote.
But the software interpreting the signal between the television and the remote is so scrambled that nothing works as it should.
When you have a condition like multiple sclerosis (or Parkinson’s), there is physical damage that can be seen on a scan.
When you have FND, there is nothing that shows up on a scan because there is no apparent physical cause.
That DOES NOT mean that it is “all in your head”!
Just like we can’t see the signal traveling from the remote control to the television…we still know that the signal is real from the reaction of the television.
We press the button…the television does something.
And if it doesn’t do the right thing, that doesn’t mean the signal isn’t real.
It just means that the software is misinterpreting that signal.
And…THAT is what a nervous system with FND looks like.”
vestibulo-ocular reflex, neuroplasticity, and predictive brain
A quick second glance at that heading maybe helps explain why this is all so confusing. These are just a few of the words and concepts I’m learning and trying to wrap my head around since my new diagnosis. I’m hoping to share more…I want to share more…because there is a lot happening. I’m just waiting for the words to happen, as well.
So while I wait…I owe a huge thank you to Sara @chronicallysparkles. Thank you, Sara, for allowing me to use your words when my own are lost to me.
